Family experiences of Long Covid

And my mum is really affected my mum. You know, she said she feels like she’s been grieving for me, even though I’m still here. I’ve also seen friends do that. Because it’s loss of the person that I was. And she didn't expect to see, you know, her 32-year-old coming home and caring for her and then seeing me in the wheelchair for the first time and now using a walking stick or the wheelchair. It’s all been a lot emotionally to process. So, it’s really impacted on my family as a whole. Yeah.

And she’s really, she’s found it very difficult to settle I think and I’m aware that quite a lot of that I think is anxiety related, I think she’s quite anxious because things are still not back to normal, you know, she’s not had normal, well she’s not had normal for goodness knows how long really. So, she, yeah so she’s now really struggling with things not being normal and Mummy not being at work and having to go to school and a whole new environment and blah, blah, blah, blah, blah, blah and it’s, you know, is still really worried about me, really unsettled by health encounters which is challenging when your mum’s a doctor [laughs]. She’s had certain, because of work she’s had so many swabs poor thing that she’s just absolutely traumatised by them. So worried about me not being well, so, for example, I had my booster jab a couple of weeks ago and I said, “Oh I’m going to go and have my booster jab while Daddy takes you swimming,” and she just cried because she was so worried about Mummy having another injection and so yes so, she’s not, she’s not doing brilliantly from that point of view.

But the children did. I mean, they rose to the occasion, and they managed amazingly well. But whenever I got up, three weeks later, I’d never seen such a travesty of a house in my life, the mess was unbelievable [laugh]. The disorganisation – chronic, but they survived.

And were the children anxious at all, were they worried?

I don’t know, they didn’t appear that worried. my second daughter would be quite a worrier but she would hide it very well, she would never tell you how she was feeling, she just every day would come and say, “How are you today?” and I just said, “Oh, not too bad,” because I knew they were going to be scared or worried, you know? So, I don’t think they ever... I don’t think they ever felt really worried and stressed. In fact, we’ve never had that conversation about how they felt when we were both sick; I don’t know what they felt really...

Yeah, because a lot of the time, a lot of the time, like her memory just just like, just dies and, like and like today in fact, like I was just leaving her room and she’s like, “Oh, hello William,” like I just entered it was, it was slight-, slightly weird.

Like a little bit confused, kind of?

Yeah.

And do you worry about her, like in the future?

Yeah.

What do you worry about?

Because like she’s actually been, because like she hasn’t, she hasn’t really been able to leave the house without a wheelchair for a while because because of her fatigue, and like I worry that she won’t like that she won’t really recover from it, so she’ll like always have to go around in a wheelchair.

Are you able to make yourself lunch?

No. It means going downstairs and getting everything ready.

So, does someone make lunch beforehand for you?

Yeah or my son will get it for me when he’s here during the day. I think he had, ‘cos he’s looking for a job at the moment, so if he gets one then we’ll have to re-think it out. Might be my husband has to leave a sandwich as well as breakfast, maybe, I don't know.

Yeah, so your son, is he sort of between school and finishing school or?

He’s finished school. He, he, he lost his way academically during, during the lockdown ‘cos he was meant to be doing his GCSEs that year. And they just got abandoned, basically. He tried to go back into sixth form and he’s, his head wasn’t in the right place. He saw me get sick overnight, virtually. Realised that if you really want to do something, you’ve got to do it now. Don’t leave it till later, just in case.

Some of the other things that I’ve noticed is that I wonder if any other people have noticed something similar. My seven-year-old uses a lot of language that I think, I wonder if he’s picked it up from me. So, at the moment, he’s talking a lot about being exhausted. Feeling tired and needing to rest. I don’t think I say it all that much, but, but it’s surprising to hear a seven-year-old use those kind of words. And so, he must have picked something up from the way that he sees me every day at home, obviously taking rest and sitting on the sofa. Yeah, so that sort of, that bothers me a bit. I don’t think he’s the happiest child that he was before Covid he was quite carefree and happy. And I don’t, I feel there’s more of a weight on him now. But it could just be developmentally appropriate. But it feels like something’s shifted.

But when he’s crashing and having… and getting worse we’ve both found that really hard emotionally to deal with. So, we got to the end of the summer and he caught a cold, which was very minor but it seemed to trigger all the symptoms. And then he had a huge crash where he’d been able to do a little bit every day to, to where he was essentially bed-bound again and not able to, to even get up or stand up or do anything. He couldn't walk, you know, he couldn't even bear to be in a bright room or have any noise so he would be lying in a, a dim and quiet room. Couldn’t watch any television even.

For [son] the impact is huge, his life has essentially just stopped. He’s just had his seventeenth birthday and he was saying that I’ve had my sixteenth birthday and I haven't done anything, which is true. He’s spent most of the time on the sofa. So, you know, that’s had and of course, his education has stopped, and his social life doesn’t happen. I don’t have a social life either because you know, the most I can manage is to fit work in and then come home so yeah [laughs]. Everything is taken up around what he needs.

But my husband’s social life has really reduced. He were a captain of a rugby team and he had to stop that. We used to go out, you know, to the pub with us friends and things and we don’t do that anymore. I think he’s riddled with guilt really to do anything. I tell him, you know, you’re gonna have to go and see your friends. But he’s, he’s quite angry really with his friends, I would say because I’ve had a lot of emotional support from my friends and family, and I just think men don’t talk the same. And he’s felt, so if his friends do ring him, they like to talk about football or you know, men’s stuff. And he feels like none of them really know what his life, what’s happened to him and he’s got a brother who knows and my brother knows. But a lot of the men round him, like his friends have got no idea. And he finds that hard. Like he said, if he speaks of them their biggest worries are like so small compared to his. He finds it hard to be sympathetic. I think he’s quite angry. Not angry at them, just angry at life, I think. Not angry, he’s frustrated. He finds it frustrating.

I’m one of seven children and my brothers and sisters have sort of kept in touch sort of periodically but I don’t think, unless you’ve lived with someone who is experiencing this I don’t think, I don’t think they can fully understand it so that was, you know, we were, you know, went down to the beach and, you know, even the little toddlers were walking for a lot longer than I was and that was, you know, I just had to sit on the rock and wait for them while they carried on the walk and then they came back. And you know, it feels strange, but I’ve sort of got over that really. It’s more, it feels like for other people, I think other people are a bit, I mean my sister was just in tears with me saying how sad she was for me, and I suppose I’ve got beyond that, really [laughs].

But it’s yeah it’s when, when you define yourself by what you do for other people that’s a really, that’s a really big change and I suppose what I’m trying to do is I’m trying to see this as a gift that this is giving me an opportunity to sort of, sort of revaluate, you know, who I am and what I contribute you know, issues of identity and relate to work as well and, you know, what the role I have in the family and what you contribute to society and that’s, that’s quite scary because in a way the rugs pulled from under your feet, everything that you thought was true, you know, those things aren’t necessarily no longer the case. But it’s trying to see it as an opportunity as well yeah.